Donna Renzetti (left, standing) Vice President, Corporate Services and Chief Financial Officer at West Park Healthcare Centre came in on a Saturday to make sure there were plenty of chairs at the ready for the Trillium Gift of Life Network (TGLN) presentation on organ and tissue donation and transplant. She needn’t have worried: the gathering group were all wheelchair bound – or rather, wheelchair liberated (depending on your point of view) with the range of wheelchairs equivalent to a high-end car collection, complete with customization. I’m a public member on West Park Healthcare Center’s Palliative and Supportive Steering Committee, and am always up for attending education sessions that can increase my knowledge and understanding of end of life concerns and issues for their residents. Donation is not just for the able-bodied These good folks, for whom day to day living is their first priority, were interested in learning about organ and tissue donation. Their home is the complex continuing care section of West Park Health Center and many live with terminal degenerative conditions like Lou Gehrig disease (ALS) , Lung Disease (COPD), stroke, traumatic brain injury. Restricted and diminished though these West Park residents may appear to me – it’s clear they know exactly with whom they want to sit and are affectionate and caring with one another – communicating by various means. This is a substantially different crowd than the week prior, when I’d attended an Ontario Hospital Association conference on Ethics and Legalities in End of Life, where TGLN also made a presentation, encouraging discussion, decisions and making wishes known. That group, from various healthcare organizations, heard:...

Dr Rebecca Sudore: changing focus from planning end of life to preparing for end of life decisions An Associate Professor In-Residence in the Division of Geriatrics at University of San Francisco, the impossibly young Dr Sudore is dedicated to helping vulnerable older adults and their families make informed medical decisions, especially for advance care planning and at the end-of-life Dr Sudore, at a University of Toronto Bioethics Speakers series, used this question to illustrate the impossibility of meaningful planning for life’s end: ‘Do you know what you’re going to eat next Tuesday? The answer: ‘it depends’. And so it is in planning for what’s essentially the unknowable in the end of life journey. Dr Sudore’s research and objective instead is: prepare for decision-making. Seemingly simple questions, says she, open the floodgates. Is there anyone you’d trust to make medical decisions? Do they know? What have you talked about with them? 50%-76% will be unable to make our own end of life medical decisions The importance of conversations with the surrogate can’t be emphasized enough. Even so,having spoken to dozens of surrogates as part of her research, the findings are distressing and revealing: Many surrogates don’t want the role. Sudore thinks it of paramount importance to ask the question of patients: Are you ok with your surrogate making ‘in the minute’ decisions? Giving your surrogate permission to override or change your wishes – putting flexibility or leeway right into your Advance Directives – can make the difference between a surrogate adjusting to loss or suffering from Post Traumatic Stress Disorder. Dr Sudore gives, as an example, this discussion with her...

Medical decisions: why does saying ‘no’ mean you need a psychiatric consult? That’s what seems to happen if someone – anyone – decides they don’t want any more medical interventions. Take this story of a 70-year old woman – still vigorous and enjoying life: “After her oncologist carefully explained the benefits, risks, and alternatives to the recommended course, she declined to proceed further. Instead of launching into an arduous medical regimen, she has chosen to focus the remainder of her time and attention elsewhere, on matters outside of medicine.” This did not sit well in the medical field: “On hearing such a story, some of my medical colleagues question the patient’s soundness of mind. Could she be depressed? Might she be in the early stages of dementia? Could she have simply failed to grasp the full gravity of her situation? To them, the failure to take advantage of the wonders of modern medicine smacks of irrationality. The solution? Her physicians need to sit her down again and explain the situation more clearly. Should this fail to elicit her consent, perhaps a psychiatry consult would be in order.” Why on earth can’t the uber zealous healthcare professionals just take it at face value? As she sees it, she is not refusing treatment. She is affirming life. “….she envisions her last months as the final, fitting chapter of a life well lived – her chance to live up to all she has been pursuing since her youth. As she sees it, she is not refusing treatment. She is affirming life. She knows that its end is every bit as natural as...

Living, knowing you are going to die Drawn, as I am, to learning ever more about how we die, and how ‘one’ dies, this David Dow title, “Things I’ve learned from Dying ” had me at ‘hello’ Dow – who is very much alive – is a death row lawyer in Texas . He writes beautifully about, and pours insight into the humanity of those on the row. But that’s not why I found his book so important and compelling: it’s the parallel story that I fastened on: Dow’s story of Peter – his father in law – who died within a year of diagnosis. Throughout the sickness, its treatment and decisions about, Peter shares with Dow some light, along with the darkness of regrets, disappointments, conflicts and depression, and self-awareness. These emotions and reactions along the journey, tell an eternal story: Not wanting to lose a loved one, perhaps at the cost of the loved one’s quality of life As Peter says: “You all want me to stay alive, but that is because you want me to be in your lives. Of course that flatters me, and makes me happy and sad, but that desire does not give you a ballot, and even if it did, it is wrong to cast a vote that treats me as a means to your ends. I want to die with dignity, and you are all determined to thwart me.“ Peter is the loved one, torn between his own needs and those of his family: “For [daughter] Katya, either I am here or I am not. For me the line is elusive....